Photo: Exclusion from Srdjan Stojiljkovic flickr photostream

This is a post about user involvement in the context of UK university research. All UK universities are currently finalising and submitting their impact case studies for the 2021 Research Excellence Framework (REF). The REF is “the UK’s system for assessing the quality of research in UK higher education institutions” and assesses research outputs as well as impacts. Although a university’s performance in the REF does not bring the financial benefits that it once did, most universities continue to invest significant resources in the exercise because of the way it can influence league tables and subsequently international reputations and student recruitment.

Measuring research impact (for REF purposes) is defined as research which has “an effect on, change or benefit to the economy, society, culture, public policy or services, health, the environment or quality of life, beyond academia.” Impact is assessed through case studies which detail a body of “underpinning research” and the social impact derived from it. It is all supported with clear documented evidence of the impact and this can take various forms such as policies, reports, and testimonials. Each case study is assessed by a panel for the discipline and ranked for “reach and significance”. While the REF2021 framework provides a relatively wide scope for showcasing different forms of impact, a question this raises is whether “reach and significance” can be judged on a level playing field? For example, could it be that some types of impact will appear to have more impact by virtue of the prevailing political context and the inevitable tide of policy-based evidence that sitting governments will seek out and prioritise because it supports their agenda? How then can research that pushes against the tide of prevailing ideology be judged proportionately?

In this context, we consider the social impact arising from a body of research concerned with structural inequalities in public and patient involvement in health and social care. The research has undoubtedly delivered impact beyond the academy, although in forms which are not necessarily in keeping with bureaucratic approaches to capturing and ranking impact.  Instead, the research has been part of an iterative process within an activist framework, supporting welfare recipients’ empowerment to generate their own impact and challenge policy directly, opening up new spaces of impact. Developing this form of impact over the last decade has been a considerable challenge, given that political ideology has been accelerating rapidly in the opposite direction.

Our research highlights structural inequalities as they occur in the lives of disabled people wishing to have a say in how their rights and needs can be supported. It includes theoretical insights, critical commentary, policy analysis and empirical work undertaken in partnership with user-led organisations (ULOs). Underpinning our work is the notion that Patient and Public Involvement (PPI) as manifest in UK policy has mainly been tokenistic and inadequate for empowering service users. Our research identifies power dynamics and identifies two key components that mean PPI has failed to enable service users’ full democratic engagement. Our critical analyses highlight how recent institutional attempts to involve people in policy and practice mirror rather than overcome the traditional exclusions of mainstream politics, retaining the structural inequalities already present in the health and social care sector. We highlight the need to widen participation in diversity across all aspects of health and social care planning, provision, professional training programmes and research. In an analysis of the 2017 UK Research Councils call for cross-disciplinary research in mental health (written jointly with service user academics) we reveal how it failed to engage with ULOs and meet its aim to address inequalities, empowerment, ethics, confidentiality and trust.

To counter tokenism, survivor research should be seen as an area of research in its own right which can enable:

the inclusion of people experiencing distress, as well as exploring and advancing the role of research in knowledge production and change-making and advancing critiques of epistemology and epistemic justice”.

We highlight the contrasting potential of grassroots user movements to take more control of provision. Underpinning this research is an epistemological position developed within ‘Mad Studies’, a global movement concerned with promoting an explicit split from the biomedical model of mental health and placing value on first-person knowledge and psychiatric survivors’ experience. Our work has highlighted the importance of preventing the co-option of Mad studies, ensuring it remains connected to the overarching social movements that gave rise to it. We also address this concerning UK anti-stigma campaigns, critiquing how survivor testimony has tended to be appropriated by policymakers without due regard for an ethics of inclusion.

Across all of these projects, social impact is something that has evolved iteratively. It has grown within an activist framework, through working with welfare recipients in various forms including partnership, co-production or facilitating user-led processes and spaces. Our research group includes a psychiatric survivor who occupies an academic and service user position, bridging the divide between the academy and the ‘beyond’ – a divide contrived and perpetuated by how research impact is defined and academic structures maintained.

Specific examples of impact in this new space include using our research to enable User Led Organisations (ULOs) to influence policy; to challenge the devaluing of patient voices in NICE guidelines; and challenge welfare sanctions and conditionality. Unlike managed patient organisations, ULOs (historically grounded in civil rights movements) are democratically controlled.  Austerity politics and the Conservative government have contributed to a decline in the influence that disabled people can have on the welfare system with a significant decrease in numbers and funding of ULOs since at least 2014, representing a crisis for ULO survival. Joint academic-ULO campaigning enabled ULOs to directly advocate for new sustainable funding structures before several major national charities. Joint academic-ULO campaigning also directly challenged the NICE depression guideline update in which there was no update to the service user experience chapter. As a result, a ULO representative attended a meeting between stakeholders and the NICE executive and directly argued for the inclusion of patient experience research.

In a joint academic-ULO research study, we gathered survivor testimonies of welfare claimants whose mental health was severely impacted by welfare conditionality and sanctioning. The research revealed the ways in which the regime directly led to psychological harm. On the foot of this research, a co-produced report was launched in the House of Lords at which individuals who participated in the research spoke about their experiences – a rare experience for a ‘research participant’ in academy-controlled research in which the academic normally speaks to politicians about the research and participants become invisible. Parliamentarians present were visibly moved, with Baroness Grey-Thompson ‘left in tears’.  Participant testimonies were submitted to calls for evidence from the UN rapporteur on extreme poverty and the Work and Pensions Committee (WPC) inquiry into benefit sanctions which both ultimately called for an end to the sanctions regime. The Conservative government has not ended sanctions, however, barring a short reprieve during the first UK lockdown.

Bringing down the walls between the academy and the ‘beyond’ means that we, as academics, need to be prepared to give up control and relinquish research ownership. This is hard for us as academics confronted with research performance targets and REF templates. These demand that we stamp ownership all over our work, claim authorship as individuals and for our institution and make linear claims that ‘our’ research directly led to specific impacts. Framing impact outside of this lens, we can but claim that against political odds and without being able to claim major policy change, our body of research (which we do not ‘own’) has nevertheless helped service users, disabled people and patient organisations to challenge harmful policy, generate their own impact and instigate campaigns. Our research aims not to direct change linearly, but to support grassroots activism from marginalised groups and thus present an alternative understanding of research impact beyond the academy.